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Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

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  #1  
Old 03-12-2011, 10:11 PM
ashlee ashlee is offline
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Default 8 week old with??

Hi my name is Ashlee and I just had a baby girl in January. She has a birthmark on her upper lip that reaches up to her nose. I have seen a few doctors about this, (7 to be exact) but none of them are paediatric dermatologists. I am very concerned and just want her to be properly diagnosed because I have been told it was a port wine stain and then a stork bite and then a strawberry hemangioma!??? It's driving me insane not knowing exactly what it is. I have a paediatrician for her but he will not refer her to a dermatologist he says just to wait until she is older like around 8 until we do anything about it and just to leave it, and see how it develops!! I really don't want to do that because I am worried if I leave it it will get worse and then harder to treat. I am mostly concerned because she is a little girl and it is on her face. I am just writing because I don't know what to do. How do I get this diagnosed properly if no one will send her to a dermatologist. I live in windsor ontario. I just want to know for sure what it is exactly and then go from there. I know they are very hard to diagnose when they are this little but I think a dermatologist would have a better opinion then all these random doctors that have seen her. Any info anyone has for me would be greatly appreciated. It hasn't changed at all since birth, it actually seems lighter than at birth. When I feel it it feels flat and smooth just like the other side. It has not grown in size (yet) and if you look very close you can see little red lines almost like veins through it. It fades when pressure is applied, gets a lot redder and darker when she cries or there is a change in temperature and seems lighter and almost not visible in certain lights and then darker in certain lighting. Or on certain days. Some doctors tell me it will go away and others say it won't? She also has a very red birthmark on the nape of her neck that I have been told will not go away, and a very light one between her eyes and then another small light red one on her back above her bum. Hope someone has some advice for me thank you. I have photos to upload but can't for some reason??
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Old 03-13-2011, 12:12 AM
missy missy is offline
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If you will email photos to contact@birthmark.org I will attach them to this post.

How close are you to Sick Kids? Have you seen a physician there yet?

Missy
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Old 03-13-2011, 12:35 AM
Donovan Donovan is offline
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Hi Ashlee, I also live in Windsor ( actually La Salle ). Our daughter has an arteriovenous malformation.Do you have a photo of your little girl? It is very frustrating to go to so many doctors and get so many different diagnosis. We were lucky from the start that our pediatrician diagnosed our daughter correctly and then sent us first to London and then to Toronto for a second opinion. If I can help you in any way please let me know. We have dealt with many doctors in the last 12 years.
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Old 03-13-2011, 03:16 AM
ashlee ashlee is offline
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Hi Donovan, yes it is extremely frustrating to see so many doctors and not get a definite diagnosis. I am just wondering who your daughter's paediatrician is? The first diagnosis I got for my daughter was at birth in the nicu and that doctor told me it was a port wine stain. Since then there has been many opinions of what her birthmark actually is. My daughters paediatrician won't even refer me to a dermatologist in windsor let alone in london or toronto which is what I really want! If her doc wont refer me to anyone here is there any other option for me to get her to see someone in london who really knows what they are talking about when it comes to birthmarks? Thanks!
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Old 03-13-2011, 03:20 AM
ashlee ashlee is offline
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Missy- Sick kids in toronto? No I have not seen a physician there yet. If that's where you are talking about, I'm about 4 hrs away.
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  #6  
Old 03-13-2011, 01:22 PM
missy missy is offline
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Default Photos

Here ya go!
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Old 03-15-2011, 06:58 PM
ashlee ashlee is offline
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Thank you for posting the pics.
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Old 03-15-2011, 07:17 PM
ashlee ashlee is offline
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Can anyone help me to find a paediatric dermatologist in windsor ontario???
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Old 03-15-2011, 09:01 PM
Donovan Donovan is offline
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Hi Ashlee, The pediatrician that we saw was Dr. Galiwango. The only dermatologist that I've seen for one of my children is Dr. Toth. Have you thought about e-mailing your photos to any of the doctors posted on this site? Dr. Elena Pope works at Sick Kids and I believe that you could e-mail the photos to her directly.
Liz.
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  #10  
Old 03-17-2011, 03:25 AM
kaykay kaykay is offline
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it never fails to amaze me how little people know about birthmarks when theres so many of them out there. Good luck with your baby. keep looking you started in the right place here
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